Newly Diagnosed Checklist

Navigating a new diagnosis of PSP, CBD or MSA can feel overwhelming. We’ve compiled this helpful guide to easily connect with the CurePSP community, learn how to become your own advocate and stay proactive along your journey.  

Connecting to the CurePSP Network of Support

1. Order an informational packet on PSP, CBD or MSA and peruse our full catalogue of educational resources.

2. Consider attending a “101” course (three-day educational support series) or joining a online support group.

3. Know what regional CurePSP support systems exist or what educational events are being held virtually and/or in your local area.

4. Bookmark our YouTube channel for easy access to our extensive educational video library. 

5. Join the CurePSP Discussion Group on Facebook!

 

Becoming Your Own Advocate

1. Communicate your new diagnosis to your primary care physician or any clinicians who may be on your care team. Be sure to provide them with copies of CurePSP’s educational resources!

2. Ask your neurologist or movement disorder specialist for referrals to interdisciplinary therapies (speech, physical, occupational, social work counseling, etc.)

3. Become familiar with our suggestions on “Preparing for Doctor’s Appointments” to make the most of every visit (COMING SOON!)

4. Download and print a copy of “Best Practices in the Clinical Management of PSP and CBD” . Bring this with you to your next appointment with your neurologist or movement disorder specialist.

5. Learn about our Centers of Care Network and check the map to see if there is a center near you! 

 

Looking for more ways to take action? Consider these steps…

1.  Peruse www.clinicaltrials.gov or Fox Trial Finder to see what clinical trials are active and/or recruiting and find out if you are eligible for any studies. 

2. Use your voice for change! Help us advocate for public policies that can positively impact the CurePSP community. 

3. Look through our list of Assistive Devices & Adaptive Equipment compiled specifically for symptom management.

4. Read about our CurePSP Quality of Life Respite Grant Program.

5. Consider enrolling for our Brain Donation Assistance Program.